"I feel I'm no longer an alien" : the experiences of females who receive a diagnosis of Autism Spectrum Condition late in life : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Auckland, New Zealand
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Date
2021
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Massey University
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Abstract
The purpose of this study was to explore the lived experiences of females who receive a late diagnosis of Autism Spectrum Condition (ASC). A growing number of women identify and receive diagnoses of ASC in adulthood after years of unexplained difficulties. However, as societal understandings of ASC are male-dominated, autistic females are underrepresented and frequently diagnosed late, leaving their needs misunderstood. This study aims to provide further insight into women’s lived experiences with ASC to increase awareness of their specific needs. Interpretative Phenomenological Analysis (IPA) was used to analyse the accounts of nine females diagnosed with ASC late and the significance this had on their lives. The participants described their experiences prior to and then post-diagnosis. Prior to diagnosis, common barriers included cost, gendered misconceptions, and male-dominated ASC stereotypes. The participants were aware of being different prior to diagnosis and expressed difficulty fitting in, particularly with gendered and social norms. This led to coping strategies such as camouflaging (masking) and often poor coping such as emotional focused coping strategies ultimately, leading to mental distress. Each participant had a unique journey to diagnosis, with three seeking help in their teens, while the remaining women were diagnosed in adulthood. Despite the differences, all the participants went through a period of adjustment and made changes in their lives once they identified as autistic. While these changes were specific to each individual, they were largely positive, including forming connections with the Autism community, adapting to accommodate social challenges and sensory sensitivities, and conducting their own research. The diagnosis was tied to a better sense of self (self-acceptance), a sense of belonging to a community (shared social identity), and an increased awareness of triggers that could lead to meltdowns or autistic burnout. Despite the positive aspects of diagnosis, the participants reported ongoing challenges with socialisation, friendships, understanding social norms around relationships. An important finding in the study is the high level of self-awareness and sociality participants reported. Participants described awareness of the social and communication challenges they face and clearly expressed the impact of the gender expectations and pressures placed on them. Alongside the high level of awareness concerning social and gender expectations, many participants described adopting compensatory strategies to comply with these expectations and mitigate the sense of difference and exclusion they felt. These findings highlight the complexity of navigating identity as acting ‘neurotypical’ and acting like a woman. Lastly, irrespective of age, experiences of stigmatisation related having ASC was mentioned by all the participants, indicating the challenges of living as a marginalised identity. In summary, social representations of ASC are complex as it is largely an invisible condition that presents differently for females. More work needs to be done to increase awareness and acceptance surrounding ASC, particularly the unique way in which ASC presents in females and the effects of gender on the experience of ASC. These findings have implications for clinicians and provide insight into areas where support can be provided to females who receive a late diagnosis of ASC.